Solving Spinocebellar Ataxia

This is a story about a family who has a rare, genetic disease.  The disease is a slow, progressive disease that worsens through time and robs the individual's body of it's motor skills.  The disease is characterized by slowly progressive clumsiness in the arms and legs, a staggering lurching gait that can be mistaken for drunkenness, difficulty with speech and swallowing, impaired eye movements sometimes accompanied by double vision or bulging eyes, and lower limb spasticity.  Some individuals develop dystonia (sustained muscle contractions that cause twisting of the body and limbs, repetitive movements, and abnormal postures) or symptoms similar to those of Parkinson’s disease.  Others may develop fasciculations (twitching) of the face or tongue, neuropathy, or problems with urination and the autonomic nervous system.
Basically, you become a prisoner in your own body. The disease is called spinocerebellar ataxia 3 or Machado Joseph disease and right now, there is no cure. Though the picture is old, it's a good one because it depicts both my father and my sister still living, in their wheelchairs. My father was 69 when he died, but my sister was only 55.  I'm sure a lot of individuals would say that that is a pretty full life.  But what the disease does is from the time of diagnosis until death is  it makes you suffer, everyday robbing you just a little more of your strength, and your dignity to persevere.
The remainder of my family(2 brothers and myself) have it as well.  And, being genetic, all my brother's and sister's kids have a 50/50 chance of coming down with the disease.  The money I am trying raise is an insignificant amount in what is truly needed for additional funding.  All money raised in this project will go to the National Ataxia Foundation, ataxia.org.   My goal in life is to bring about awareness of this little known disease and I truly hope and pray that you will help me reach my goal.  Thank you and god bless!

Donations

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  • Heidi Mainwaring-Pickering 
    • $200 
    • 74 mos
  • Claudia Schwartz 
    • $50 
    • 74 mos
  • john manuel 
    • $250 
    • 75 mos
  • holly downey 
    • $100 
    • 75 mos
  • Anonymous 
    • $50 
    • 75 mos
See all

Organizer

Eric Peterson 
Organizer
Seattle, WA
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